Thursday, February 13, 2014

Parker Updates and Prayer Requests

We so appreciate all of you who read our blog and ask to keep updated on Parker.  We know many of you also pray for Parker and our family and let me just tell you "THANK YOU"!!!  The prayers are working and Parker has come so far!!
Parker's checking out an adapted tricycle at therapy
Here are some updates and current prayer requests:

1) Parker has minor surgery scheduled for February 20th.  This will be his 10th time under anesthesia.  He is getting a second round of Botox injections into his eye muscles, will be fitted for glasses and will get a thorough teeth cleaning.

Parker had his first round of Botox injections last year and they definitely helped.  His eyes do align much better than they used to but they are not quite where they need to be yet.  The eye surgeon feels like one more round of Botox should help so we've decided to give it a try.  The younger he has this done the more chance for success so we don't want to wait too long.

Since he'll be under anyway, we asked for him to get his teeth cleaned as well.  Parker HATES getting his teeth brushed and we know we aren't doing a good enough job.  We aren't expecting them to find anything wrong in this area, we're just trying to stay ahead of any problems.

**Prayer request:  That the surgery and anesthesia go well with no complications.  That the second round of Botox works and Parker's eyes will fully align. That any side effects will only be temporary and wear off quickly.  That no harm is done.

2) Parker is getting to be quite mobile.  He pulls up to a stand all the time, he likes to get up to a tall kneel, he is crawling, he continues to scoot all over the house.  He is learning to cruise around furniture also.  This is great and we are thrilled!!  However, we are also scared.  Parker is quite dangerous now.  His balance isn't very good and he does fall a lot when he's in a standing position.  He does have a helmet that we can put on if we're not right there with him when he's practicing his dare devil moves.  However, he's pretty rough on his little body and we don't want him to have any major injuries.

One area where this is of great concern is when he's in his bed.  He pretty much outgrew his crib and we had it converted to a toddler bed.  Due to his dangerous shenanigans, his mattress is now on the floor but this isn't ideal and he can still manage to hurt himself with this set-up.  We very carefully examined all the options for different beds and we're now hoping we can get a "safety bed" approved through our insurance.  While I wish there was a different option, this will be the safest option for Parker.  We're hoping his insurance will approve one that is custom built for Parker's needs as the ready-made ones just aren't very appropriate for him.

**Prayer requests:  That we can find a safety bed that will meet Parker's needs, keep him safe and will work for many years.  And that Insurance will cover it.  (The one we are hoping for right now is called the dream series made by Beds by George).

Um...yeah, can you say Mr. Danger?!?!

He's still pretty darn cute though!
3) Parker had the Deflux ureter surgery at MAYO done in October.  We followed up last week with the local Nephrologist at Children's hospital and had some imaging studies done.  Leaving that appointment last week left us feeling a bit bummed out.  While she didn't try to interpret the results fully (she wanted to leave this for the Urologist at MAYO), we didn't get the impression the surgery was successful.  The Doctor said Parker's kidneys were still enlarged and one of his ureters was actually bigger than it used to be.  We also were told a few days later that one of the blood tests came back on the high side so we need to increase Parker's fluid intake pretty drastically.

We were expecting the Urologist at MAYO to recommend either another Deflux surgery like the one he already had done or to recommend an open surgery as this has better odds of success.  To our great surprise, the MAYO Doctor said based on the imaging studies, he would consider the first surgery to be a SUCCESS!  There is evidence that his body responded to the Deflux paste and it did the job it was supposed to (by creating a barrier so the urine can't reflux like it did before).  He said we should take Parker off his prophylactic medication, call him if he gets any urinary tract infections and to repeat the imaging studies in one year!

While on the surface this seems like very good news and we should be ecstatic, Paul and I both feel uneasy. We're nervous about taking him off his meds (he's been on prophylactic meds since birth) and we really don't like playing the "wait and see game".   We will review all of this with Parker's pediatrician next week to make sure we're all on the same page and that she is in agreement with the Urologist's recommendations.

**Prayer Requests:  That Parker won't get any UTI's after going off his prophylactic meds, that his kidney's continue to function properly with no adverse effects and that his ureter reflux resolves completely.  That Paul and I won't stress over this news and take the opportunity to be excited.

Alexa and Parker playing dress up.  I think we need some "boy" dress up clothes so Parker doesn't always have to be a fairy or a princess!
4) Parker seems to be doing pretty well with his airway issues.  He is tolerating his speaking valve, can handle his cap (where he has to breathe normally with no assistance from the trach) for up to 1-2 hours on good days, and seems to be managing the oral taste trials that we are doing.  His trach changes have been a bit difficult over the past few months though which could be nothing or could mean there are some more granuloma's in Parker's airway.  His next airway scope (with more anesthesia) is at the beginning of April.

**Prayer Requests:  That Parker stays healthy through the rest of winter.  That Parker continues to tolerate his speaking valve and cap on a daily basis and we can increase the amount of time Parker can use the cap.  That Parker's scope in April will go well and that his airway will look better than ever.  That Parker continues to enjoy taste trials and will learn to take and manage bigger bites and more different types of foods.

5) Since Parker is handling his speaking valve and cap better, we are getting to hear Parker "talk" more often.  There really is nothing better in the world than listening to Parker's laugh.  IT IS THE BEST!!

 We'd like to help Parker learn how to make more sounds so that he can communicate with us more.  We can tell he wants to say things to us and we don't always know what he wants or needs.  Parker does know several signs but due to his fine motor development, learning new signs is difficult.  I haven't found a good communication device that Parker can use either.

**Prayer Request:  That Parker will increase his communication skills so he can interact with us more and tell us what his wants/needs are.  This could be by increasing his language, increased signs, or a different communication avenue.  We just need to identify the best ways to facilitate the communication.

There really is much more I could say but I think this covers a lot of where Parker is at right now.  Thank you again for the prayers!  They mean the world to us!!

Wednesday, February 12, 2014

Tuesday, February 11, 2014

Valentine's Ribbon Wreath

Apparently, I'm obsessed with wreaths.   

I guess there could be worse things.

In honor of Valentine's Day, Alexa helped me make a new ribbon wreath.  She cut ALL of the ribbon pieces for me and really did a great job.  

We followed the same steps as we did with our Halloween Ribbon Wreath but this time we covered the foam wreath in about 3 layers of red tulle before starting.  I'd highly recommend this!

We hung it on the mirror that is above the couch in our living room and we love it!

Happy early Valentine's Day!!

Sunday, February 9, 2014

Feeding Tube Awareness Week 2014

This is the start of Feeding Tube Awareness Week 2014.   Feeding tubes mean a lot to us!!  After all, they helped save Parker's life.  

Last year, I wrote a blog post about Parker's Feeding Tube Journey.  You can read that HERE.

While we are in much the same spot as we were last year, my little guy looks much more grown up now!!
Parker showing off his g-button
You may or may not be able to tell in this picture but Parker has had some weight gain troubles this year.  He pretty much stayed at the 30 pound mark for nearly a year.  He is finally above that now due to a different formula, increased calories, added lipids and some additional "real foods" that we are blending up and adding in with his formula.  I hope to continue to increase the "real foods" but we are taking it pretty slowly for now. So far he's had "smoothies" made with spinach, bananas, applesauce and green beans.

While we are very grateful for the feeding tube, the ultimate goal, of course, is to not need it anymore.   That's a long process though.  Teaching a child to eat with his mouth when he hasn't done that for three years is definitely a challenge.   The most important things I've learned during Parker's feeding therapy sessions is to make the process as positive as possible, don't be afraid of huge messes, let Parker explore and just keep trying, trying, trying.

We've been doing more taste trials for the past couple of months.  Parker's favorite thing to eat is applesauce mixed with pixy stix sugar.  Afterall, that's probably what I would eat for every meal if I could too!

Parker is still pretty opposed to taking food off of the spoon when I offer it to him; however, he occasionally does open his mouth up big enough for me to sneak the spoon in.  His preferred method is to dip his index finger into the food and then suck it off his finger.  Hey, whatever works!!

Meal time for Parker pretty much just means he is going to make a huge mess and get his food everywhere. He does enjoy the mess-making though and handles the different temperatures and textures fairly well so that's a start.  I look forward to seeing how much progress he will make in this area by next year.   He will likely still have the feeding tube, but that's OK.  It's been hugely helpful for us and has allowed my little boy to come so far!!